We waited just over three weeks for the results appointment by the specialist nurse . I agree the NHS are pretty slow as my OH waited nearly 6 weeks to get his MRI . You contact your GP as our had all the results before our appt came in. She was first class and told us albeit she did say she they are the professionals in that field . Best wishes liz & OH X
Hi Cazzd , 5 weeks seems a long time but probably not excessive in today’s NHS. Do you have any contact numbers you can ring to get some idea of what is happening? I suspect your results will go to a multidisciplinary team (MDT) to get a consensus opinion and a plan (which is completely standard). All this doesn’t help your stress levels and we have all been in this waiting position and found it off any previous scale experienced. Please do come back to us when you get your results, there are some fantastic people on this site and we can help you. Best wishes, David
Hi Cazzd.
Good afternoon it's great to meet you today!!!!
Yes 5 weeks seems to be a long time mind you the NHS is under a lot of pressure currently.
I had to wait only a few weeks for my appointment with the cancer consultant.
Do you have a contact number for the clinical nurse specialist???
If not can you contact the PALS Service at your hospital as they can chase things up on your behalf.
Please please come back to me if you require any further help/support.
Prostate Worrier.
Hi David , the anxiety is terrible . We’ve been waiting since March to see a consultant .it just consumes your life wondering . We finally gave an oncology appt on Thursday so will update thereafter . Cazzd get on the phone tomorrow and chase it up .
all the best to all you warriors & partners
LIZ & OH XX
Good Evening Cazzd
5 weeks is too long to be waiting. You should have some telephone numbers for your team, your CNS (Cancer Nurse Specialist) or an e-mail address for any of the above - You need to get on the case tomorrow.
As johnam said, my GP knew my results and even rang me with them before the MDT meeting so again that's another avenue to look at. If you are in England (not the devolved Nations) ask your G P for FULL access to your medical records on the NHS app. Results appear there at the same time as your G P gets them.
I do hope this helps.
If the stress is taking it's toll, please give our support line a call on 0808 808 00 00 (8am to 8pm 7 days a week) they have some amazing support.
If you have a "Maggies" near you - call for a coffee and a chat with them - they are a cancer support charity and are really great - here's a link for you - https://www.maggies.org/
I hope this helps - if I can do anything else for you, just let me know.
Kind Regards - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
I was diagnosed on 30/04 via an MRI scan.
Two further scans - CT scan and bone scan - followed in quick succession.
The biopsy was on 23/05, at which time I was informed that the CT Scan had confirmed the MRI - Seminal Vesicles and 1 lymph node involved, but no distant mestatases - and that the bone scan was clear.
I was given a estimate of when I would hear back, and told when the MDT meetings were taking place. I told them I would note this in my diary.
The meeting for the biopsy results was on 07/06, which was less of a problem because I already knew I had the disease and roughly how far it had spread. Thanks to these web pages I had a fair idea of what the treatment plan would be. HT was started.
I was told that it would be six weeks before I saw the Oncologist. In the end an extra clinic was put in, and I saw the Oncologist on 18/06.
Now I put the timeline in, not to show off, but to show that there seem to be real differences between hospitals.
Some do not seem to be setting expectations correctly.
I was told on 30/04 that the process was like a conveyor belt. I was also advised that Prostate Cancer, unlike many other cancers, does not usually spread quickly, even the aggressive ones. They confirmed that they would get me through the process before I took any further harm, and this they appear to have done.
My hospiatla has kept me in the picture by telling me at each stage what would happen next and that, whatever the result of the next test, there would be a treatment plan. They were careful to answer questions.
It may be that, because I visibly was taking notes throughout, as was my other half, that they simply ensured that what they had said, happened.
You may need to have a discussion with the next person you talk to and ask them to confirm an estimated time span.
When they told me, I noted it down, looked at my diary, and said to them that " if I haven't heard from you by ??/??, who can I call?".
They gave me a contact and I, again, visibly wrote it down.
If they hadn't given me the information I requested my plan was to stop off at the PALS office before I left the hospital.
At no time did I need to do that.
I really hope that you get your results quickly.
I hope even more that they are favourable to you.
Hi
My husbands was 2 weeks, but waiting for a date for surgery was not good as he is a Gleeson 9 so we had an anxious wait for the treatment although the diagnostics was quicker.
I would ring the specialist nurses to ask if your results are back if you don’t mind getting them over the phone.
good luck we know the waiting is so hard my husband is now waiting for histology from surgery!
M
Hello Again Cazzd
As a further bit of information - here's our guidelines to how long you should wait for information and treatment and how to "raise your voice".
I hope this helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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